Saturday, July 25, 2009

Declared my mom, speaking about my protectiveness during this last family vacation and the rantings I had about summer school inadequacies. I'll admit to my increased awareness and facilitation during social opportunities, though it is NOT due to my lack of faith in my son. The vacation allowed for much observation and has strengthened my reserve.

I am certain that many of my friends think the same as my mother and my mom is the only one that feels comfortable enough to say it. It is hard to explain (to the "outside" world) how much social interaction is a learned tool. Most of us inherently understand and quickly adjust. We recognize non-verbal ques, understand slang language, and have developed the skill to put ourselves in someone elses shoes (at least theoretically). We comprehend what someone may be thinking or feeling. These things are not quite so easy for my son. I need to teach him the intricacies of communication, reactions, and defense tactics, and I need to teach in very specific ways. Below is an excerpt of my niece's birthday party while away on my family vacation:

As the party was in full swing, the kids ran to the swing set to play on the monkey bars. My son (proud to be part of the group)was swinging on the swings but this prevented the others from using the monkey bars:

Young family member to my son: "Stop swinging! Hey c'mon, STOP SWINGING (inflection louder), we want to use the monkey bars!"Young party friends begin addressing my son: (they get on the band wagon and begin to yell my son's name) and "STOP SWINGING!"Son: (in his thoughts) Oh, they are yelling my name. This is fun. I'll keep swinging. I like it when they cheer me on. He smiles (a bit devilish I admit) enjoying the attention.Young family member: GET OFF NOW!

We interjected upon seeing the growing conflict and had our son get off the swing. This move was not without its issues. In tears, he stopped swinging, then ran to us because he couldn't understand what he did or why we came to get him. I never like to create any public displays that might end up making my son out to look different, especially to his peer group. I worry that it may be embarrassing to him and try hard not to take any chances that his self-esteem be compromised.

I was disturbed to see how little tolerance the other kids had. The time frame between the request and expectation of action from the request was almost immediate. It was an eye-opener for me. Kids are very straight forward and can be callus. (Typical) kids will be (typical) kids. They are still learning the virtues of patience, so the burden is on me to find and give my son what he needs to survive in such an environment: A.C.T - Acknowledge, Communicate, Talk.

Acknowldge with a rote, verbal or non verbal response - Processing takes longer for my son. He understands requests or replies, but it takes him a bit longer to actually process the information. In a society that reacts and expects immediate gratification, this is detrimental in my son's ability to keep the peace. Peer frustration occurs. Solution: Teach my son a nod, wave, or immediate response that will work for most (if not all) circumstances and allow him the time to actually process the information, yet provide acknowledgement.

Communicate back: "You want to go on the monkey bars?"

Technique/Talk - Use words as a defense tactic, like HOLD ON! WAIT! and some slang that other kids may use in almost mocking fashion, like "Let's see you do it!, I'll stop when you come close". I plan on observing the more common defense expressions used by children, then putting together a song and social stories as teaching tools. It would be impossible to cover every situation he may get in, but it may be generic enough to use in multiple situations.

Most of our spectrum children are taught early on to take the lead from their peers. That is one of the benefits of inclusion. My son has successfully mastered the art of laughing when others laugh and to go along with the crowd to blend in and become part of the group. Though I don't believe this is all together wrong, there is a danger. My son may not decipher between when there is a true joke to join in the laughter or if the laughter of his peer group may be one of mocking. I am concerned that he may actually laugh in spite of himself. So, once again, there is a double meaning in something most parents don't have to give a second thought to.

For now, off I go to discover ways to teach my son the expression of laughter versus the expression of something more sinister, like mocking....

Thursday, July 23, 2009

Okay, I know what you all are thinking: Comparing autism to the new crazed "Twilight" book (and/or movie) series is quite a stretch. I admit to succumbing to this new obsession. With that said, I was humored by my 6 year old (autistic) son's seemingly innocent vanity and the need to run his fingers through his hair (which he believes is long and due for a haircut). With all the press on Rob Pattinson, I couldn't help but think of the new heartthrob, and this same signature move of his, that has taken over girls hearts everywhere. I had to chuckle.

If you have been following the publicity, there is a competition between the two male love interests in the book(Team Edward/vampire vs. Team Jacob/werewolf). Many readers (or audience members) will side with one or the other depending on their own personalities, needs, or desires. As I watch my son flicking his hair to the side, I asked myself who would win a competition between Team Rob (Pattinson) vs. Team Ryebread (a nickname and the team we name ourselves during our annual walk for autism). Of course, you all know my answer... No Competition -Team Ryebread wins by a landslide! Why, you ask? Aside from the fact that he is my son and I see only him when I imagine the cutest boy in the universe, he has traits that I really do believe would endear himself to the world. I'm not an expert on the superstar, so I don't know Mr. Pattinson or his character, but I can speak for my son. Team Ryebread's heart is pure, his nature-gentle, his character strong, willing and sensitive. He has a charisma about him and if he loves you, a trust is gained that will make you feel special. Beside all these things, he is handsome (I know this, but many people tell me too) with an adorable sense of humor. Sorry Rob, even with your gorgeous hair, my vote is for team Ryebread!

I go further with this somewhat ridiculous "Twilight" series comparison and begin seeing some consistencies between (if you can imagine) autism and the "Twilight" vampire family (the Cullen's). Hear me out:

Routine in nature to avoid detection and self preservation(especially Edward)

Dietary constraints/"vegetarians"

Beautiful

Good people

Heroic (to the people that love them)

A family affair (if you get involved, you are affected)

This may describe my affinity for the storyline. My heart skips a beat every time I think or see my son (similar to Bella) and I have an empathy for such uniqueness and struggle. I decided to write about this in hopes that young people may come across this blog in the search engines while looking for more info about their favorite "Twilight" superstar or storyline.

My message is this: Next time you come across a person with unique traits or something that just seems a little off, refer back to the Cullen's and how you (as well as Bella) were somehow able to get passed any judgements to find their true value. Reach out to that person with sincerity.

Wednesday, July 15, 2009

What can I say about vacationing? It always seems like I need a vacation from the vacation. My family did manage to skate past all the drama that went along with visiting Grammy, uncles, aunts, and cousins. I am actually pretty happy about that! What may sound like a simple thing to do, is not so simple when you combine the personalities, schedules and priorities of 17 people. Let me break it down for you:

My family

We need a daily plan. Every morning, my son will demand to know what we are doing all day long. He will drill you for what will happen next until you finish with bedtime. So, that is a priority..a schedule of events. The problem: there really were no events scheduled, so this was left up to me. Other problem: the weather was not cooperating. A bit of a nightmare for us when our kids spend a majority of their time in outdoor activities (playground, little pool, riding bikes etc.) I did have projects up my sleeve, but was hoping that on vacation we could break away from the norm.

We have some dietary constraints because my son is a very picky eater (as many children on the spectrum are). We generally never leave home w/o a "bag" filled with a bagel or juice or cheezits, pretzels etc. This alleviates the stress of going out to a restaurant that does not have something on the menu my son would eat. Though I bring the bag "backup", I never like to leave my son out of anything. If we order Dunkin Donuts, I order a bagel for him (whether he eats it or not). If we go out to lunch, I try to order chick nuggets or grilled cheese for him (will never eat the nuggets and the grilled cheese has to look just right). It is all about including him with us and never making him feel separated. Trust me, it is worth the $3 or more to make him feel part of the group.

Siblings w/babies

Needed to be at a place of rest for the morning and/or afternoon naps. That pretty much takes care of the whole day or may only leave an hour for a quick trip. Needless to say, many times the whole family didn't spend time all together. It's not the fault of anyone, just the stage a family is in. It is hard when there are babies.

Bottles, diapers, and cargo during any outing. Lord have mercy, thank goodness I am past that stage! I am very happy with my lunch bag backup.

Sibling w/older children

How much do you think the older children wanted to go feed the ducks? Yay for the jumping pillow, though there still was the endurance of my son's relentless need to go to the mall and visit the carousel. And YES, we had no choice. When it is on my son's list, it is what we need to do for him to make his day complete. .. so sorry to my family.

More independence- That's a wonderful thing for a parent (sibling). Unfortunately, the other parents(us) need to oversee much of the play in order to provide adequate engagement opportunities and police the socialization between peers. Many times, we found ourselves watching all the children while the rest of the family enjoyed their own time together. Not exactly relaxing.

Mother w/ food prep schedule

The days centered around food prep, meals, and eating. This type of obsession "bit" into the daily events and enjoyment of family time. We eat when we are hungry. Yes, usually it happens around the same times each day, but is taken care of at the time the hunger pains occur. Prep is not needed....throw hot dogs on the grill, chips and (tah-dah)...a meal for all. 5-10 minutes.

Again the food schedule. Immediately after breakfast we were all being asked about lunch and dinner....too much time on this!

Did I mention about meal times? Ugh!...so annoying-especially when one of my kids will only eat a handful of items that requires so little time. Such an unnecessary stress to the week.

So this was the set up for our family (reunion)vacation. All and all, many things learned (part 3), so there is a definite positive side to all the confusion. Fun had by all...not quites so sure about that. The kids did enjoy being with their Grammy, aunts, uncles, and cousins. That in itself was the reason for the trip.

I regret to tell you all that this is only part 1 of my vacation series. Stay tuned for part 2 - Vacation (Socialization deficits) and Part 3 Vacation (learned & on list)

**Make sure you check out the jumping pillow link. It was really great for the kids. My son loved it. The pillow was possibly the one thing that kept our sanity. It was outside and provided such great feedback that really helped keep my son centered throughout the day.

Wednesday, July 1, 2009

Out of the blue, I had this strange picture in my head. I was standing at the corner of a traffic light with a sign that said:

WILL WORK FOR THERAPY

It got me thinking about what is important to me and what lengths I take to protect that which is so priceless. In the past, I admit I have offered to "pimp" myself out at my son's school or therapy sessions. It is the one way that I can convey the necessity of investing in my son. I will do what I can to help teachers, paraprofessionals, or therapists. If mailings need to be sent, letters typed, copies or phone calls made, laminating etc., I will gladly provide these services to keep the focus, and an extended effort, on my son.

The sign initially was comical to me. Any parent with a child on the spectrum understands the financial drain it can take for additional therapy, alternative therapy, behaviorists, nutritionists, etc. Until recently (I live in CT), many insurances have ignored our pleas for plan inclusion. It left much of the financial burden on us as parents. It still does. The very fact that "therapy" came to my mind first is significant.

On the other hand, many of you might say that you would just pay for the therapy. Yes, of course, I would do that too. That really isn't the point. It has to do with motivations that money can't buy or the supply is inadequate. What does each individual hold so dear, that they are willing to be humbled enough to stand out on the road with a sign asking for that very item? The answer is limitless and very personal.

So, I pose the question to you (& would love to read them in my comments)

Will Work For (fill in the blank)....

Other possibilities:

Will Work For Love

Will Work For Peace

Will Work For Medicine (for my child)

Will Work For Trust

Personal Note: My son wrote the words on the sign. Given all of his fine motor difficulties, it is the most beautiful script I have ever seen. That my friends is what we all share....an immense appreciation for the most fundamental of tasks.